nilotinib

I am new to this site and the above drug also marketed as Tasigna, has probably already been discussed here in some detail and I apologize if this is repetitive.

I was diagnosed with Parkinson's some 11 years ago and at that time my neurologist put me on 3 levadopa per day and 1 azilect at night. At first I had tremors on the right side =hand, arm, leg and foot. I went to Europe 2 and a half years ago and underwent enhanced focus therapy which completely ended my tremors. Unfortunately, the disease continues to progress and I now often have tremors on the left side. I am also having trouble with my voice and my mental abilities.

I spend a good deal of time researching reports on new medications and therapies and have been most impressed with trial reports on niloinib. Apparently it works directly attacking the weby bodies in the brain and therefore works against all of the many symptoms of this disease.

I have absolutely no confidence in my present neurologist and I am planing to try this drug on my own at 30ml twice per day, for 90 days. It would be a great help if I could find a neurologist who would assist me????????????????

12 Replies

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  • email me at rrunk@optonline.net and I'll send you some info that I think could be very helpful to you.

  • I cannot get thru on the email address you listed.

  • Hmmmmm that email should work, don't know why it's not.

  • perhaps you could contact me at my home email which is dubois.dennisl@gmail.com

  • I am unfamiliar with this med and will need to research it first before I comment on it. However, your statement that you have no confidence in your neurologist raised a big red flag. Is he/she a movement disorder specialist? Have you seen anyone else for a second opinion? Are you in an area where your choice of doctors is limited?

    I would definitely seek a second opinion with a MDS and take your research with you.

    Best of luck.

  • This cancer drug is only being used in clinical trials. This site may help you.

    com-movement-disorders.site...

  • You wrote 30ml but the nilotinib dose is measured in milligrams, abbreviated mg, and the dosage used in the trial was 150-300mg/day. There is good reason to think that nilotinib should work, but he trial was only a phase 1 without a control group. Nilotinib does have adverse effects for some patients, although the investigator claimed there was little at this dosage.

    You should also consider NAC, which has been shown to improve the underlying condition in a controlled trial: journals.plos.org/plosone/a...

    NAC is an inexpensive over the counter supplement.

  • Thanks for the info and sorry for the delay in my response. I am still pursuing more info on Nilotinib and have received info from two people who have or are taking the drug and have not seen significant improvement in their symptoms.

    I have been taking, off and on,Pure NAC tablets of 600mg for the past 3 plus years and have not noticed any improvement when using.

    Ate you aware of the drug amantadine and do you have any information you could share with me. thanks Dennis

  • I tried amantadine and it aggravated my dry mouth problem so I discontinued it. It seems to help some people so if you do not have dry mouth it's worth a try.

  • I have an interest in Nilotinib. Where can one purchase the drug and how much does it cost per dose? Thanks for your help.

  • I take Nilotinib, 300 mg a day, for chronic myeloid leukemia. I don't notice it's done a dang fool thing for my PD but who knows? I might be doing a lot worse without it than I realize.

  • Thanks for the info Beckey. It's good to hear from an actual user of the drug. I was planning to go to a medical center \ pharmacy in India to try the drug but I think i will wait a while longer while I check out other possibilities.Have you heard of amantadine? MJ Fox credits the drug with most of the improvement in his symptoms. Also there is UDCA which is under trial at the University of Sheffield in England. you can check this out at http://www. sheffield.ac.uk

    I sent them an email and am still awaiting a response

    Take care Dennis

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